Challenges of Gathering a Family History

The first step in deciding whether to have genetic testing usually involves charting a family history of cancer on both your mother’s and your father’s side. It’s best to work with a genetic counselor, nurse, or physician who is knowledgeable about heredity and cancer. He or she can help you understand the pattern of cancers in your family.

Some relatives might welcome your sense of initiative and gladly get involved. But you also could encounter some resistance.

Possible issues to prepare for include:

You might need to contact relatives you don’t know very well or who are out of touch with or even estranged from you or your family. This can be challenging, but gathering as complete a family history as possible (on both sides) is important. Some people are pleasantly surprised to forge new and even closer relationships with relatives as part of this process. In others, relatives might resent the contact, which can raise all kinds of difficult emotions. If you were adopted and don’t know who your birth parents were, or if you grew up knowing only one of your biological parents, this process might bring up feelings of loss and distress.

Some family members might be guarded or even angry about what they feel are “too personal” questions. There was a time not that long ago when people didn’t talk about having cancer. If they did, they told only their immediate family members. Relatives might not want to share details about their diagnosis or that of deceased parents, grandparents, siblings, etc. Maybe they find it too painful to talk about. Some people have the attitude, “What’s past is past; why dig it up now?” Others might view a cancer-related genetic mutation as a kind of weakness or “defect” and not want to confront this possibility.

Some might question why you’re pursuing this path. Not everyone agrees that it makes sense to seek information about the future risk of cancer. Some people see genetic testing as “opening a can of worms” they can’t really do anything about — and just another source of potential worry on top of the challenges of everyday life. Relatives with this mindset might push back and not want to get involved in putting together a family history. You could find yourself facing a division between relatives who support what you’re doing and those who don’t. This can lead to some pretty interesting family gatherings and conversations!

If you face resistance, it’s important to respect your family members’ feelings and privacy. Some family members may still be struggling with the fact that they or people they love had cancer.

Andrea Forman, MS, LCGC, a genetic counselor at Fox Chase Cancer Center in Philadelphia, PA, offers this advice: “Give it a shot, at least once, even if you think it’s awkward or you haven’t talked to this person in what seems like forever. Nowadays people are connected in so many ways: Facebook, email, social media. Just give it a try and do what it takes to get them the information.

“If it’s a relative you’re closer to and you’re trying to convince them it is important, just give them a few nudges,” she adds. “Certainly you don’t want them to dig their heels in. At least you’ll know you’ve done what you can do, and forgive yourself for the fact that family is not always going to take your advice.”

You may wish to send a brief letter or email that explains why you’re pursuing genetic testing, along with some educational information about the genetic test(s) and possible results. If your family history suggests that a cancer-related mutation is present, your relatives deserve to know that, along with the results of testing. If they live close to you, give them the contact information for your genetic counselor or other medical professional who is advising you. Let them know that meeting with a professional to get more information does not require them to go through with testing.

Keep the lines of communication open to the best of your ability. Your relatives might have a change of heart later on and want to get in touch to find out your results. You’ll at least know that you did what could to make them aware of what’s happening.